My dad was in an ALF and received hospice services there in addition to his regular care. His ALF was happy to have hospice come in, as the worse his condition got, the more attention he needed. So, it was an extra set of ears to listen to him, and extra set of hands to bathe him and do other things he needed, and with his pressure sore and the wounds on his hands, it was an extra RN to take care of those sorts of things that needed a lot of attention. They brought in wound specialists for those things several times. Because the hospice nurse was from a tiny town near where my dad had lived most of his life, there was an immediate attachment to her. He really, really liked her so it was 1 more person for him to socialize with. He was so cut off from his formerly very active social life, that having her, the hospice aid and the hospice volunteers who came in just to talk, gave him more people around that he was comfortable with. They were a Godsend.And, from a family perspective, they gave us support, info., and went to bat for us to try to get him off some meds that his CNP and dr. were trying to keep him on. With the literature they gave me, I had a much better understanding of the dying process, which was a big help for me. I had never been around anyone with a prolonged illness like this, so really didn't know what to expect. My dad had the choice to move to a hospice house but I'm glad that we didn't do it because it would have been very disruptive for him at that point (having to get used to a new environment, new staff, etc.). He died several days after we visited this hospice house and he was accepted, so it was a good choice for him not to go at that point. If I were to be in a similar situation again, I would definitely want the extra help and support of hospice. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Jeanne,There typically is a financial advantage to using hospice. Hospice agencies typically pay for the medications needed for the "hospice condition" (my phrase). So, if the condition is LBD, then LBD meds will be paid for but not diabetes meds or heart meds. Hospice pays for incontinence supplies.Robin

Thu Apr 12, 2012 10:45 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Constant echolalia - how much time left?

In my dad's case, his Namenda and Aricept were not paid for by hospice, nor was the director of hospice allowed to take him off those meds despite requests from the POA to do so. Apparently doctors can overturn hospice doctor's requests AND the wishes of the POA. And, I had to write the checks every month for prescriptions that many of his health care providers and I didn't want him on. That's another whole chapter!They did, however, cover dressing changes and costs like that, which would have been a $15 charge per bandaid, bandage, etc. at the ALF. Any other non-life prolonging drugs that my dad was still taking (except the morphine) I believe were paid by my dad and his prescription insurance coverage. I think this varies from place to place and this may be something you want to check into. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

What was the written condition on the hospice orders that allowed your father to be eligible for hospice? If it was something like "failure to thrive," then hospice wouldn't have covered dementia meds.

Have you filed a complaint against the so-called care facility where your father lived? Are their actions legal in MD (or where ever your father lived)?

Robin

Thu Apr 12, 2012 12:52 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Constant echolalia - how much time left?

Yes, he was finally accepted under "failure to thrive". He'd lost over 100 lb. unintentionally by then, had cut way back on eating, drinking, his pressure sore was out of control, constantly infected, etc. He was not accepted for his neurological problems. It was his CNP and psychiatrist that were the problems, not the ALF. Overall, I'd give the ALF staff who was there the last 6 months an "A". The new director and new head nurse were very supportive and went to bat for us trying to get him off the meds that were making him more conscious of how miserable his condition was. The palliative care dr. who was the hospice director tried also, but that's when the CNP threatened to sue me and my sister for "endangering the life" of my dad. The CNP was nothing but a power-tripping jerk, and so was the psychiatrist, whom I fired. BTW, I think this CNP was the pres. of the CNP assoc. of that state!

I know I should be calling this to the attention of various medical boards in that state, but frankly, I didn't have the energy to care for my dad AND take those 2 on in a legal arena. After he died, I was too exhausted to get it together to file complaints. The money that the psych. bills for "patient care" is the biggest ripoff I've ever seen. He comes in to the ALF, looks at charts for a few minutes, doesn't see the patient, then bills Medicare and the person's ins. some huge fee, for what? It makes my blood boil to think about the unscrupulous drs. (not all drs. are unscrupulous, but this guy was something else) who make these huge sums of money by "seeing" patients in care facilities. It should be illegal.Aren't you sorry you asked Robin?!

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

We had a local support group member who was very dissatisfied with the hospice agency she hired to care for her mother. A year after her mother's death, the group member picked up the ball and went after the hospice agency and particular staff. She succeeded in getting one RN fired. She may now try to get the RN's license revoked. So, important things can still be accomplished long after a family member's passing.

Thu Apr 12, 2012 3:25 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Constant echolalia - how much time left?

On another forum, a member's husband went for a month in a rehab facility with a dislocated hip before the orthopedic surgeon saw and diagnosed it. He had been in terrible pain and they claim to have X-rayed it and it was 'normal'. I agree--such negligence and incompetence should not go un-addressed.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Apr 12, 2012 4:25 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Constant echolalia - how much time left?

I know that I should do something, and ordinarily, I am the first to speak up and try to remedy bad situations. What I don't want to have to deal with is fighting a lawsuit, and that is what I am afraid they will do - try to sue me for defamation of character. Even if I have strong evidence for the crazy stuff they did, I do not want to have to go through that. BTDT, won, but it tooks its toll on the whole family.

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Thu Apr 12, 2012 4:41 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Constant echolalia - how much time left?

Remember that, for a lawsuit to be viable, actual harm had to have been done.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Apr 12, 2012 5:22 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Constant echolalia - how much time left?

True, but couldn't they make the case that they have lost business, etc. and just make my life a living he(( even though I am just providing facts?

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Thu Apr 12, 2012 8:46 pm

sferios

Joined: Mon Mar 21, 2011 11:26 pmPosts: 49Location: St Pete Beach, FL

Re: Constant echolalia - how much time left?

These are all reasons why we need a single-payer health care system that does away with the private insurance industry entirely.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Last edited by mockturtle on Mon Apr 16, 2012 2:22 pm, edited 1 time in total.

Would the political discussion (and beyond-the-pail comment) best be taken to the off-topic area or off-line?

Mon Apr 16, 2012 2:18 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Constant echolalia - how much time left?

Robin, I removed my post, not because you are running the forum but because I recognized that it was off-topic. If it was my remark you called beyond the 'pail' [presumably you meant 'pale'] I must protest that it was true, as those working in the health professions will attest.

ON EDIT: Robin, and others, I apologize for my rather nasty tone. Having a bad day today--a reason, maybe, but not an excuse. Please forgive me.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Apr 16, 2012 2:38 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Constant echolalia - how much time left?

I also want to note that the remarks I deleted had to do with the paperwork burden in private insurance vs. Medicare/Medicaid, from a health care professional's point of view, in disagreement with the linked article. It was not a personal comment. My apology above is for the post above. Got that all straight??

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

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